Wednesday, April 4, 2018

What is autism?

According
to the Centers for Disease Control and Prevention, an
estimated one in 68 children (1 in 42 boys and 1 in 189 girls) has been
identified with an autism spectrum disorder (ASD). Even though there are so
many families facing similar circumstances, many still fill isolated and alone.
For those whose families aren’t directly impacted, there are many
misconceptions and questions surrounding autism.

As
the mother of twin sons with autism, Karla Akins, author of A Pair of Miracles: A Story of Autism,
Faith, and Determined Parenting (Kregel Publications), hopes to help create
a greater awareness and understanding of what autism is and offer encouragement
and reassurance for families living with the effects of autism firsthand.

When the doctors first diagnosed my
twin boys with autism in 1998, the only thing I knew about it was the character
Dustin Hoffman played in the movie Rain Man. It sounds incredible, but I
honestly wasn’t aware that there was a diagnosis for people with developmental
disabilities who acted as my boys did. Society was just beginning to be more
aware of a growing group of behavioral characteristics called autism.
Looking back on people I knew growing up, I can now understand that they may
have had autism, when I thought they were intellectually disabled. I didn’t
understand that, just because someone couldn’t express themselves, it didn’t
mean they weren’t intelligent.

About the
Author

Karla Akins
is the mother of five, including twin sons with autism. She has a bachelor’s in
special education from Western Governors University and a doctorate in
Christian education from Kingsway Theological Seminary. She has nearly four
decades of teaching experience in homeschooling, private school and public
education.

Akins
has also served in ministry for more than 30 years and is co-minister at
Christian Fellowship Church in North Manchester, Indiana, with her husband,
Eddie. She is also a popular speaker at conferences and retreats.

In
addition to A Pair of Miracles: A Story
of Autism, Faith, and Determined Parenting, Akins is the author of four
other books. Her first novel, The
Pastor’s Wife Wears Biker Boots, featured a homeschool mom and a child with
autism.

Akins
enjoys riding her motorcycle, sipping chai lattes and snuggling with her three
dogs and two cats.

Enjoy this very informative interview with Karla Akins about her book, and her children.

An interview
with Karla Akins,

Author of A Pair of Miracles

According
to the Centers for Disease Control and Prevention, an estimated one in 68
children has been identified with an autism spectrum disorder (ASD). Although a
growing number of parents face similar circumstances, many still feel isolated
and alone. In A Pair of Miracles: A Story
of Autism, Faith, and Determined Parenting (Kregel Publications), author
Karla Akins, the mother of twin sons with autism, offers encouragement and
reassurance.

Q: Tell us a little bit about your
family. How many children do you have, and how did your family come together?

I
have one step-daughter, two biological sons and two adopted sons. We had
struggled with infertility and came to foster parenting because of our desire
to have another child.

Prior
to adopting the twins, we had two foster children who were adopted by other
families. It was after a foster baby we had from birth to almost 11 months old
and was given to an adoptive family (the agency we were with would not allow
foster parents who already had children to adopt) that God gave us the
opportunity to be foster parents to the twins.

Our
social worker (who knew we wanted to adopt) called, and we had about 30 minutes
to decide whether or not to say yes. I knew I’d never be able to let them go,
so I sensed this decision was an adoptive decision, not just a foster-parenting
decision.

The
twins were preemies, and Isaiah came home from the Neonatal Intensive Care Unit
first. A month later Isaac came home, and the adventure began!

Q: A few months after you brought your
adopted your twin sons home from the hospital, you learned they were born with
Fetal Alcohol Disorder. How did they behave differently from other children,
and what clued you into the fact something else might be wrong?

The
twins screamed constantly and were very, very difficult to calm. They had an
amazing stamina when it came to screaming and could scream for hours. They
would start screaming even before they opened their eyes to wake up.

Doctors
chalked this all up to the twins being premature. Because they were premature
and born to a “low-functioning” mother, they didn’t really give us any other
explanation. It was a given in their mind that due to their prematurity they
would have unusual behaviors. At three months they were diagnosed with
microcephaly (their skulls too small for their brains), and it was assumed,
because of their facial features and small head circumference, it was due to
fetal alcohol disorder. Fetal Alcohol Syndrome Disorder (FASD) is difficult to
diagnose (at least it was back then) because you need to have the mother’s
admission that she drank while pregnant. We didn’t have that admission, but the
twins are textbook cases of the syndrome.

When
they were diagnosed with microcephaly, I was determined they wouldn’t keep that
diagnosis. I laid my hands on their heads every single time I touched them and
prayed their heads would grow. God answered that prayer. They have
regular-sized head circumference! Truly a miracle. If they didn’t, their
cognitive functioning would be much worse.

Q: How old were the boys when they
were diagnosed with autism? How much did you know about autism before their
diagnosis?

The
twins were four years old when they were diagnosed, but I knew something was
wrong years before the official diagnosis. Not only were they a textbook case
of FASD, but they are of autism as well. It’s important to remember that autism
can have co-morbid diagnoses. In other words, having autism doesn’t mean you
can’t have other diagnoses as well. Did the FASD cause the autism? We have no
way of knowing.

When
the boys received their autism diagnosis, the only thing I knew about autism
was from the movie Rain Man, which
means I knew nothing! Plus, autism is different in every individual.

In
1997-98, the only thing I had was a rickety old IBM computer someone had given
me. It barely worked and was one of those with the green screen, but I used it
to hook up to AOL. (I can still hear that dial-up sound in my ears!) Once
online, I connected with an amazing crew of mamas and grandmas who also had
children with autism. It was those women who led me to resources. I have to
tell you, we were on the cutting edge of research in those days, but as far as
early intervention was concerned, it was very difficult to get anyone to listen
to us regarding what our children needed to have to succeed. It was very, very
hard to get people’s attention. If it weren’t for those women, I don’t know how
I’d have survived those early years. They were a lifeline.

Q: Who will benefit from reading your
new book, A Pair of Miracles: A Story of Autism, Faith, and
Determined Parenting?

I
hope families and caregivers will be encouraged by reading about our journey
and might gain a few ideas on how to work with their child. I also hope they
will feel like they’re not alone in the struggle. I know I like to read books
that validate what I’m feeling. It’s always good to know you’re not the only
one in the trenches, fighting the good fight of day-to-day survival with
autism.

I’ve
included a generous section on how to work with your child. These include ideas
that worked for us but also some evidence-based interventions proven to work
for a lot of children with autism. Since I’m also a special-education teacher,
I hope the book will help educators understand what families deal with. I’ve
sat on both sides of the IEP table. I know the stress of advocating for what’s
in the best interest of my child, but I also know how it feels to be an
educator. Educators and parents need to work as a team, and the book gives
great tips on how to do so.

Q: What was the doctors’ prognosis of
how the boys would be able to function as they grew and matured? How did you
work through the grief that followed the news?

The
working title of this book was Pie in the
Sky. I was told by a psychologist my hopes and dreams for them to function
independently was “pie in the sky thinking” and I “better get over that right
now.” I never went back to her. The boys have done much, much more than anyone
thought possible.

For
instance, that particular doctor told me they’d never read, be able to live
independently or speak. Other doctors simply didn’t know and told me I would
have to wait and see. Only one doctor I worked with was sympathetic to me, and
it wasn’t anything he said, but it was how he treated me with such kindness and
respect when we’d see him. I wish there were more pediatricians like that
today. He never gave an opinion about the future. He just helped me get through
each medical crisis and was very encouraging to me. He made me feel like I was
competent.

Today
the twins walk. They talk and understand everything that’s said to them. Their
speech and language is a little difficult to understand at times, but they
function well enough to send text messages and talk on the phone.

I
worked through my grief about their diagnosis in stages. In some ways, I
already knew something was wrong. Developmental pediatricians were tracking
their physical development, and we could already see some things about their
development weren’t right, such as the size of their heads. I also knew the way
they reacted to sensory input was way off, and they weren’t meeting their
developmental milestones on time, such as sitting up, walking and talking. Still,
even though I knew something was wrong, I went through all the normal stages of
grief — from anger to acceptance. I still do go through some of the stages. All
parents with special needs kids deal with grief on a day-to-day basis. It
cycles through us at various times depending on what we’re dealing with.
Mostly, though, I’m so proud of my guys. They’ve worked hard to get where they
are today.

Q: When the boys were young, in a
meeting with your pastor, he asked, “Do you think you missed the will of God
when you adopted them?” Even doctors made hurtful comments to you about your
boys. How did you respond?

Well,
I’d like to say the conversation doesn’t still bother me, but it does. I do
realize some people just don’t “get” adoption and disability issues. I’ve
forgiven the pastor and those doctors, but just thinking about those
conversations makes me shake my head with incredulity. Some people don’t have
filters. They just say whatever they’re thinking.

I
was furious, of course, when those conversations took place. I never responded
negatively or rudely to them at the time, but I did stew on what they said. I’m
the type of person who when you tell me I can’t do something or can’t make
something better, it fuels me to prove you wrong. I used those conversations to
motivate me rather than discourage me.

Q: You talk about bargaining with God
and even encourage readers to “wrestle with God” in difficult times. What were
some of the questions you had for God in the early years of raising Isaac and
Isaiah?

I
would actually pray for forgiveness from God for wanting to adopt because I
sometimes worried about what it was doing to our family. It definitely took
away the tranquility in the house. I am a huge peace-lover and maker. I crave
quiet spaces. I also asked my husband to forgive me for pushing for adoption,
but he never once wavered or questioned our decision. That helped me a lot in
the twins’ younger years when they were so, so hard to care for.

I
still have a lot of questions for God where disabilities and pain in the world
are concerned. However, I do know the devil hates humans and wants them to
suffer because we are created in God’s image. Still, God’s ways are not our
ways, and I truly believe He will use our struggles for His purpose and glory
if we let Him.

Q: What have your boys taught you
about God, and how has your faith grown by being their mom?

The
boys have taught me more about everything in life and especially about God.
I’ve never seen greater faith than theirs. I’ve never seen joy such as theirs.
The twins have amazing faith. To me, they’re spiritual giants. Their faith in
God inspires me every single day. Their spirits aren’t at all disabled. Their
spirits are as healthy as yours and mine and probably even more so because of
their childlike faith.

They
are very tender-hearted toward the Lord, and they know to turn to Him for help.
Just a few days ago we had a situation that made Isaac anxious. He asked if we
could all pray, so we stood in a circle and prayed. He sobbed like a baby,
crying out to the Lord for help. That is faith. Without faith it’s impossible
to please God (Hebrews 11). Their faith amazes me. I am eager to interact with
them in heaven when they are completely healed and to talk to Jesus about them
and how their prayers affected heaven. They are true prayer warriors. When I
need prayer, I ask them to pray because of their great faith.

They’ve
taught me what’s important in life. I’m not as materialistic as I might have
been otherwise because autism doesn’t allow you to have breakables. Doors get
kicked in. Walls get holes in them. Furniture gets mauled. They’ve taught me
not to sweat the small stuff. My tolerance for imperfection is extremely broad
because of them. Societal constraints don’t worry me. Our yard might not be the
prettiest in the neighborhood because we’re so busy supervising the twins, but
the love in our house is immeasurable. It’s far from perfect, trust me, but
when I focus on the blessing these boys are to others (they love serving
people), I’m deeply humbled. I wish I could be as sweet as they are.

My
faith has grown as their mom because what the world said could never happen,
God made happen. When doctors told me they were microcephalic, I refused to
accept it. As I mentioned earlier, I constantly laid my hands on their heads
and told them to grow. They have normal-sized heads now. Doctors said they’d
not walk, but they walk. Doctors said they wouldn’t read or do much
independently, and with God’s grace we’ve proved them wrong.

Q: You include sections with scripture
to meditate on. What verses have meant the most to you throughout the years?

Psalm
139 is my favorite scripture passage because it talks so much about how God
knew us before we were born and how He is always with us.

Q: What misconceptions do most people
have about autism? What would you most like your readers to understand about
autism?

I
wish more people would understand autism is different in every person. It’s a
spectrum disorder, which means there’s a wide spectrum people fall on. I have
friends with children who have a severe form. Their children are grown now and
still can’t toilet themselves. I have friends with children who have children
who are considered high-functioning because they have high IQs, but the child
can’t shower independently without guidance. It’s a neurological disorder, not
a behavioral or psychological problem, and it manifests in a myriad of ways.
When you’ve seen one child with autism, you’ve seen one child with autism. It
will look different in another child.

Q: For parents who are walking the
road of raising children with autism, what advice do you offer for becoming the
best advocates for them when it comes to medical care?

Trust
your God-given instincts, and don’t second-guess yourself. God gave those
children to you, and He will equip you to do what is right if you seek Him for
answers and wisdom.

Put
everything in writing when you have a concern that isn’t being answered. Do
your research to make sure any treatments you desire for your child are based
on evidence and not trends.

Q: What are some of the other areas
you discuss in the book for living life with autistic family members?

I
really want parents to take their children out in public and de-sensitize their
kids with autism to uncomfortable situations. Yes, it’s inconvenient, but you
do your children no favors by hiding them away at home. Society needs to see
them, and the child with autism needs to be exposed to the sights and sounds of
the world so they can learn to cope.

I
talk about how difficult mealtimes were. They were a nightmare when the twins
were small. Food was thrown everywhere, and a lot of screaming went on. Looking
back, now I can see the screaming was from anxiety, but I didn’t realize it
then. We learned the twins ate better if they ate in the dining room while we
ate in the kitchen. We all had to learn not to take it personally. It was just
what it was. At that time, our kitchen had a cut out in the wall to the dining
room. We’d put two vinyl table cloths on the floor under their high chairs and
let them go at it. It was the only way we could eat and have a conversation.
Every meal ended up with them painting themselves head to toe with food. They
couldn’t eat solids because they had poor motor control, so I pureed everything
for years.

I
also discuss the need for a network of support because of how stressful it is
to raise a child with autism. I learned I couldn’t care for the boys without
help, and I needed to admit it.

Q: How were your other children
impacted by their brothers’ autism? What recommendations do you have for
parents to make sure their other children don’t feel overlooked?

If
I had my kids to raise all over again, I’d have been more deliberate in
scheduling one-on-one time with each of my children. I think we were too busy.
I try not to second-guess myself, but it’s hard not to. What parents absolutely
must not do is depend on their other children as caregivers. Yes, definitely,
they can help out because that’s what families do. However, every child needs
to feel they are a child and sibling, not a parent.

Q: Tell us about Isaac and Isaiah
today. In what ways are they able to function independently in ways the doctors
never expected? In what areas do they still need help?

They
do so many things on their own! They have a golf cart they use for
transportation to their part-time jobs and other places in town. Fortunately,
we live in a community that allows it. They use their smartphones and iPads to
communicate and read things. They attend church and help with various duties there.
Isaac helps with the sound system, and Isaiah loves helping in children’s
church. They are amazing helpers. They love helping people.

The
twins will probably always need to live with someone who can protect them from
being taken advantage of. They have a difficult time counting money, so it’s
easy to cheat them. They can also be talked into doing things, as they are
quite naïve and gullible. They have dual-diagnoses of fetal alcohol disorder
and intellectual disabilities, so that makes dealing with them a bit more
involved. They still need to have reminders for daily self-care and function at
about the level of an 8- to 11-year-old. They still need to be prompted to do
their daily chores (don’t we all?) and so forth.

Q:
Can you share some of the basics teachers at church and ministry volunteers
should know when working with a child who is autistic or has disabilities? What
tools are offered in your book?

My
book has a great appendix that answers questions about working with people with
autism. I give a lot of great tips on how to respond to different behaviors and
how to motivate kids with autism.

Remember
all children are unique, no matter what their ability or diagnosis. Also
remember a diagnosis is not who they are. They are children and people first.
They just happen to have a label.

Churches
can embrace families living with disabilities by providing one-on-one aides in
the child’s classes so the parent can attend their own classes. This also
allows the child with disabilities to attend church with children their own age
too.

I
offer training to the teachers and those working in the children’s department.
I love giving training seminars. People can contact me through my website. I
also do one-on-one online consultations as well. Folks can sign up on my
scheduling page.